across water

this morning, i woke up feeling grateful. calvin hasn't had a grand mal seizure in fifteen days. that's the longest stint he's gone in months and months. maybe even longer. recently, i decided to be more liberal in giving him extra thca cannabis oil. i'm convinced it is responsible for this longer stint. i figure cannabis is a better idea than adding a second pharmaceutical drug plus its side effects. they're terrible.

this morning, i woke up feeling grateful. calvin didn't soak through his diaper and wet his bed. we were able to give him his morning medicines and go back to sleep for a spell like we did yesterday. let me tell you: sleep makes all the difference.

later, while walking smellie at the fields, birds were flitting and chirping about. a friend i passed on the trails told me she had just seen some wild turkeys. mushrooms are pushing up through the earth in all kinds of sizes, shapes and colors. a partly cloudy sky turned into a low bank of fog, sharpening distant conversations like talk across water. autumn colors are emerging in fiery oranges, glowing roses, glimmering yellows and reds. this time of year is pretty damn gorgeous. i wonder if calvin appreciates the seasons.

yesterday, we got our flu vaccines at a drive-thru clinic, then went for a short car ride. the back roads were mostly quiet. in the back seat, calvin wrestled me into giving him hugs and kisses. he smiled gleefully. for the most part, the kid has been all right lately. only a few manic outbursts of yet-unknown origin. i'll take it.

today, we caravanned up the coast with the same friends with whom we recently vacationed. they're my sister and brother, and have a boy a lot like calvin. we stopped to grab some pastries in wiscasset, then made our way up to a place called sewall orchard where we watched apples being pressed into cider. we ate a sausage-ricotta pizza in a boat launch parking lot. i walked calvin to the end of the floating dock, holding him tight as it was rocking. i wonder what he made of it. wonder if he knew he was walking across water.

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dear reader

Eleven years ago today, when Calvin was just six, I wrote my first blog post. I didn't really know what a blog was, but despite my ignorance, Michael encouraged my endeavor to create one. He suggested I simply dive in. I did, and it was fun.

My initial hope in writing this blog was to increase awareness of epilepsy's prevalence and plight, and by doing so, increase funding to find a cure. For the first three-and-a-half years, I posted something every day. At some point in the process, my goal shifted into something more broad—a desire to inspire empathy for others, no matter their situation.

I hope every day I achieve that goal. I wish for others to somehow see themselves in my crafting of words about my peculiar, nonverbal, legally blind, seizure-racked, suffering child's struggles. My desire is for readers of my stories to feel less alone and hopeless in this hot mess of a world.

Unexpectedly, writing my blog has made me into a deeper thinker, a student of mindfulness, a healthier person, and perhaps even a better mother of my enigmatic child—and lawd knows, I could use some help in that department. What I didn't bargain on was the amount of love, kindness and generosity that has come my way from so many friends and strangers who read the blog.

So, I guess what I want to do is to thank you, dear reader, for believing in me, for sending on those messages of gratitude, encouragement and love, and for letting me know I'm not alone.

in the withering

the lilies are withering, their supple edges starting to darken and curl. their delicate petals drop like tears. stamens cling doggedly to the center of each blossom's throat. like tulips, their demise is gorgeous, something so worth witnessing rather than dumping them into the compost upon first fade or wrinkle.

in the garden, the black-eyed susans are beginning to shrivel. the phlox are going to seed. the peony leaves are turning yellow, red and purple. inside, because of my unintentional neglect, the fire in the stove is having a hard time getting started. as on most days, my son is a constant and annoying distraction. it's hard to get anything done when he's home. no reading, no writing, few chores. he tromps around the house and yard in purposeless circles, like some crazed, caged animal; sometimes i wonder. i spent over an hour trying to get him to do his business on the toilet—sit. suppository. wait. get up. walk. repeat. i have to stand in the bathroom to avoid disaster from happening. i won't go into the shitty details. suffice to say it's better than years ago.

as i while away the hours beside my aimless child, everything piles up—the tending of the garden, the dishes, the vacuuming, the dirty laundry, the mounds of clean clothes. it's not that stuff doesn't get done. it's just slow. thankfully, my husband helps, plus does all the cooking.

yesterday, i was up at 3:30 a.m. caring for a shivering boy who has been on the verge of a seizure for days. his teeth were chattering madly from an alarmingly subnormal temperature, probably brought on by a haywire brain. i'm spent. and when he's like this, i wonder and dread if he's withering too.

when i'm inside this house alone with my son, which is often, i feel so disconnected. his presence is not always comforting. we don't converse (he's nonverbal.) he's often unreachable, seemingly looking right through me. he is mostly non-responsive to instructions. and yet, he expresses some of his needs. he searches me out, sits in my lap for five or ten seconds before getting up and motoring on. moments later, he does it all again. that's no exaggeration. it's disturbing. at times, he's so unsettled. tense. troubled. his behavior is often intolerable. i can't say how he feels. but this empty feeling he has carved out in me never fully fills or heals. i don't always hold it together. but i must forgive myself the unravelling. it's all a part of the process. survival and regrowth.

yesterday, i saw a young father at the grocery store. he was dipping his head into his tiny baby's carry-cradle. a stranger commented on the infant's cute face. i watched the baby gaze at his father and the stranger the way calvin never looked—or looks—at me. almost no one told me our boy was beautiful. at least that's my memory. maybe they would have if i had seemed more open and approachable. instead, i was beset by loss and grief because of his deficits. had become a shell of myself while feeling the weight of an alien world. that was a long time ago. back when i first began my withering. and yet, maybe the process of opening, coming apart, and emerging into something altogether different, if looked at in the right light, can be beautiful. like a fragile flower dropping its petals in a show of naked surrender.

cocktails

When Michael is out of town, Matt leaves his wife and kids to come make me Manhattans and to keep me company. Lauren sometimes concocts pomegranate martinis while I sit at the bar in her kitchen. Dallas has been known to craft all sorts of delicious cocktails to imbibe at his place or mine. Kevin will mix me anything I want, but if memory serves, he makes a killer gin and tonic. Tim brews up the best and sneakily spirituous margarita I think I've ever downed; watch out! Luke loves to pour me a Maker's. Lucretia mixes elderberry with spirits. Jens and Barbara almost never show up without a bottle of bubbly in hand. Back before the damn pandemic, when I'd visit New York, I'd go to Petrarca, Ivano's family's amazing Italian restaurant in Tribeca, and he'd mix me up an Aperol spritz for curbside slurping. I used to belly up to the bar with a girlfriend or two and order beet yuzu martinis, rusty cowboys or Rita Hayworths, all garnet-colored drinks with a tart or spicy kick for any season, but especially good for sipping in winter. At home, my go-to is red wine, especially Gigondas and Côtes du Rhône. I enjoy a tiny glass, sometimes two, on most nights before switching to water. Once in a blue moon, I'll sip a shot of bourbon on the rocks, though not as often since my pal Woody died summer before last. During the holidays, Michael makes his family's bourbon eggnog; anyone who has knocked one back will tell you it's killer.

In short, and though I think of myself as a moderate drinker, I love a good cocktail. Perhaps since I don't drink them often, there's something special and festive about them that makes me giddy, even before I drink them! Sounds ridiculous, I know. But as Calvin's mother, I have to delight in the little things or I might wither and die on the proverbial vine.

But there are cocktails I loathe, and I don't mean the alcoholic kind. I'm talking about what neurologists and other physicians have coined drug cocktails. It's the piling-on of more than one drug at a time to treat a condition and/or treat the side effects of the drugs used to treat a condition, and to treat the side effects of those drugs, and so on. It's sickening, and I'm far from convinced it's necessary in many cases.

When Calvin was first diagnosed with epilepsy when he was two, the first few drugs he tried were as monotherapies, that is, one drug at a time. When each inevitably failed him, his neurologist would switch it out for a new one. It wasn't long, however, before the neurologist began practicing polytherapy on my little guinea pig. Calvin was barely three years old when he was prescribed three powerful drugs—Lamictal, Zonegran and Klonopin—in attempt to thwart his stubborn seizures. I questioned the addition of the third drug, a benzodiazepine, to be used as a bridge drug until the Lamictal, which must be slowly titrated to avoid serious, sometimes lethal rashes, reached a therapeutic level. I wondered why Zonegran wasn't a sufficient bridge drug since it was up and running at a therapeutic level (determined in clinical trials) from the beginning. The neurologist, who I'll call Dr. Rx, told me the Klonopin was meant to be used for only a few weeks. A few weeks turned into eighteen months, and in that time Calvin developed serious complications, including increased seizures, from the drug and its subsequent withdrawal. The use of the benzodiazepine—a class of drugs prescribed cavalierly for anxiety, insomnia and seizures, and meant only for short-term use (mere weeks because of their tendency for habituation and addiction)—felt like a cover-your-ass maneuver and a seizure-control-at-any-cost tactic. In any case, these drug combos, which are sometimes made up of as many as eight or nine antiepileptic drugs all at the same time, are commonly called cocktails. Sickening.

Thankfully, with some gumption, patience, research and gut instincts, I've been able to wean Calvin off of all but one pharmaceutical, Keppra. And with as many as five to eight grand mals most months, it's clear the Keppra isn't really working, which is why I've been slowly weaning it, too.

Suffice to say, the only cocktails we want in this house are the pretty ones made by loved ones from spirits which sometimes make me giddy.

one night away

It was just one night away. Up the coast a bit. Out to an island linked to the mainland by a tiny bridge. Side by side, the house and cottage sprouted up from a granite shelf. Below us, the gaping mouth of the tidal river raged and swelled. It was as if we were on the banks of the ocean itself. The waves breaking on the rugged shore. The surf's rhythmic hushing, as if earth's lungs letting breaths out, could've rocked me to sleep standing up.

We were guests of beloveds who have a son a lot like ours. Before gathering, we each did a Covid rapid test; all of them came back negative. It was a year ago October when we had last vacationed together in adjacent lakeside cabins. Back then, because of the damn pandemic, we had worn masks and dined with wide-open doors and windows despite the frigid night. We sat on the porch and watched leaden clouds roll across the lake and release their burden upon us. We spotted jagged lightning bolts. Heard the sky split and crack and snarl above us. Listened to the rain pelt the cabin roofs. That night, Calvin seized.

Last Saturday, the weather felt reminiscent. A break in the rain let me escape to a nearby beach revealed by receding waters. I sunk my sneakers into piles of shells and pebbles, jumped and slipped like a kid from rock to kelp, luxuriating in my ten minutes of freedom. Smellie surveyed and sniffed her new surroundings. When it began to sprinkle, I bounded up the steep path and made it to the cottage just as the sky opened up surrendering its liquid treasure.

Soon after, Calvin got his evening meds. We laid him on the bottom bunk, shoved a couch against it and padded its wooden back with cushions so he wouldn't fall out and hurt himself. I was reminded of the indoor forts I made as a kid—for fun. It took him awhile to settle in the strange and darkened space. I wondered what he made of it.

Thankfully, the baby monitor's range was good enough to reach the main house, which meant the four of us could dine together. Michael went to check on our restless child twice. Laid him back down. Covered him back up. Finally, Calvin quieted. The table set, we devoured mouthfuls of roasted potatoes, fat lamb burgers and salad, raised and clinked our glasses of beer and red wine in tumblers. We celebrated anniversaries, mini vacations and simply being together. Just as we were contemplating dessert, I heard Calvin shriek and shudder. 

"It's the fucking seizure!" I said, as I flew from the table, darted out the back door and down the stone path to the cottage. It took a minute to reach my boy, having had to tug the couch away from the bed. When I did, his poor feet were kicking the paneling. As the spasms slackened, he had great trouble catching his breath. His soft tissue and or fluids fitfully blocked his airway. I did my best to keep him on his side so he wouldn't aspirate. His mouth had bled again. As always, it was upsetting.

It took the two of us. Michael and I clumsily lugged our toneless son to our big bed. We tucked a quilted bed pad under him. Shifted his body until he was centered with his head on the pillow. I crawled in next to him. With my hand on his heart, I fell asleep looking at a panorama including nearby silhouettes of four large evergreens. A shroud of mist had wrapped itself around their blackness. It was as if they were sentries watching over us. Soon after came the deluge. It lasted through the night, shifting in intensity. It was powerful, deafening, cleansing. Its magnitude dwarfed my son's fit and reminded me of nature's awesome indifference, its absence of judgement or discrimination. In that way it was comforting, helped me feel somehow grounded and hopeful, even amid the sorrow I felt for me and my kid.

absences

As I walk the dog at the fields in late afternoon the sun descends, casting its long, early-autumn shadows. Bathed in the golden light, I get a mix of feelings both sublime and glum. I'm reminded of my splendid childhood summers, but also of times my mother rang the dinner bell calling me away from playing with my friends. I knew the fun part of my day had come to an end. It didn't matter that I'd wake up to another one. I didn't think of it. Just hung my head mourning the absence of my friends. Dragged my feet over the gravely road, heading home alone.

Leaving the fields, a boy jogs across my path. He must be twelve or thirteen. He's a little taller than Calvin and nearly as thin. That's where their commonalities stop. The boy is on his own. He is nimble. He can run. He's a fast athlete and, even at that age, serious and focused on his endeavor. Seeing him gives me pause, and I find myself thinking again about Calvin and our sorry situation with him—what if things hadn't gone so wrong?

I watch the boy run down the path and disappear around the bend. In the distance, a bunch of college students plays soccer, their fit bodies able to do exactly what their brains tell them to do. Their laughter is bittersweet to my ears. Hearing it makes my heart soar and sink, my eyes sting and blink, my mouth tighten into a smile then slacken into something more somber.

My precious boy doesn't have a single friend. He has no concept of play or sport, camaraderie or competition. He can't do those things. Doesn't have language. Navigates his world as if he were blind. Isn't very adept at walking. Has poor coordination. Virtually zero fine-motor skills. He's at the mercy of a brain anomaly, unforgiving seizures and drug side effects. I quietly lament: there's so little joy in life for him.

As I stroll home, the sun at my back and the afterimage of the running boy blazing in my brain, I feel lonesome. The wide street that runs in front of my house is desolate. There are no neighbors tending their gardens. No cars or skaters or bikers sailing by. No parents pushing strollers. No flocks of happy students crossing the road. Loneliness is not an emotion I feel often; I like my own company, like being alone. What I feel is the distinct absence of a child beside me. The loss is palpable. I sense the emptiness in it—the absence of conversation, of exchanging ideas, sharing hopes, hearing dreams, of feeling the sheer joy of walking, running, talking, biking alongside one's child. The hollow pit in my gut deepens as if weighted by a stone. The grief and loss constantly and for years gnawing at it. Thankfully, the burden has softened over time, not to the point of being in any way comfortable or easy, just slightly less dark, sharp and heavy. Less likely to literally bring me to my knees.

I've been rereading my blog posts from nine years ago. Back then, Calvin went seventy-eight days without any seizures. Regrettably, his behavior was unbearable—relentless and terrible side effects from taking high doses of three powerful anticonvulsant drugs. It wasn't a fair or sensible trade-off, so we began weaning the drugs one by one. It took us a number of painful years to get him from three down to one. Since then, however, nothing we've tried—five different kinds and repeated tries of CBD cannabis oil, Epidiolex, probiotics, increasing his Keppra, reducing his Keppra—has helped him regain any kind of seizure freedom longer than a few weeks. Lately, he goes mere days between seizures. I'm still fiddling with his dose of homemade THCA cannabis oil hoping to find a sweet spot.

I think about the boy athlete again, the young runner so sure, quick and lithe. I like to believe Calvin would be like him if things hadn't gone so wrong. And, so, I'm mourning the absence of a healthy, able child. But last night, when Calvin wasn't doing so well, I crawled into bed next to him. He reached for me, wrapped his skinny arms around my neck, curled his knees up to his little bird chest and pulled my head to his. With his eyes closed, he relished my kisses on his eyes, nose, cheeks and chin. Then, like he does sometimes, he made the sweet and soft hum I love so much—uh-uh. In my mind, it sounds a bit like Mama, which long ago he said just once. And for a fleeting moment, that empty sense of absence was filled right up.

Photo by Michael Kolster

strange, rare, amazing gazes

strange gazes. bad appetite. sour breath. restlessness. intensity. wanting to drop. choking on food. hot skin. agitation. euphoric mood. these are harbingers of calvin's seizures.

too soon. only five days since he suffered the last fit. still, i saw it coming. i gave him extra cannabis oil hoping to prevent it. maybe i waited too long; it failed to do the trick.

i kissed my restless kid. laid him back down in his bed. a rare and sadly suspicious smile crept across his face. minutes later, we heard his telltale shriek. i thought we had dodged it. i was wrong. he seized and choked. something inside his mouth bled. afterward, he had trouble catching his breath. it's always unsettling. something we dread. never gets any better.

i quickly brushed my teeth and undressed. crawled into his bed. with my palm against his chest, his heart felt as if it would burst right through his ribs. it remained pumping wildly for quite some time. caused me to fret. made me think we should start him on a new med.

finally, my little calvin drifted off to sleep. dim light seeped in from the next room. i peered over his shoulder to a portrait of him propped against the wall above his dresser. it was made when he was five or six. often, when i lay in bed with calvin in the wake of his morning seizures, i see it in the shadows, its cool blues, pinks and reds. it was done from a photo. gifted to us by a painter friend. it's masterful. full of life and color, vivaciousness. in it, my boy's eyes are bright. his smile is big and broad. his gaze, unusually fixed. he's looking right at me. it's clear he sees me. these are rare and amazing gazes. on the days when i don't see my son smile—which is most, lately—at least i can always rest my eyes on it.

over the years, calvin has lost his sense of cool. of calm. of happiness. we see glimpses, like when we tickle or kiss him. but those moments are far between and fleeting. i wonder what the drugs and seizures did to him and are doing. wonder if he is in constant discomfort or pain. wonder how his hormones factor into the equation. wonder how we can recapture his happiness again.